Ethical and Legal Issues in Ethical and Legal Issues in End-of-life Care End-of-life Care ● No conflicts to disclose Arthur R. Derse, MD, JD Director Center for Bioethics and Medical Humanities Julia and David Uihlein Professor of Medical Humanities, and Professor of Bioethics and Emergency Medicine Medical College of Wisconsin 1 2 Ethical and Legal Issues in Resolving Difficult Cases: End-of-life Care Role of Law and Ethics ● Informed Consent ● Communication ● Right to Be Informed about Palliative Care ● Both set standards of conduct ● Treatment limitation ● Law = minimal consensus ● Voluntary Stopping Eating and Drinking (VSED) ● Minimally Conscious State (MCS) ● Many areas of conduct not regulated ● Ventricular Assist Devices (VADs) by law ● Deciding for patients who have lost decision ● Ethical standards exceed legal making capacity obligations ● Advance care planning, DNR orders, POLST ● Recommendations, burden of decision making ● Physician assisted death ● Futility 3 4 Dying in America: IOM Report 2014 Bioethics & the Law We still don’t do end-of-life well l We need: l ● Technology – Palliative care – Better communication ● Appropriate use or discontinuation – Better education of interventions – Better advance care planning ● Landmark bioethics cases as – Better alignment of financial incentives – Greater transparency and accountability benchmarks – Better public engagement ● Generally, legal precedent follows – [ not necessarily better laws] medical ethical principles • advance directives, pre-hosp DNR, POLST have shout-outs; • futility & PAS noted as issues – Institute of Medicine. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. 2014 – http://www.iom.edu/Reports/2014/Dying-In-America-Improving-Quality-and-Honoring-Individual-Preferences-Near-the- End-of-Life.aspx 5 6
Communication Informed Consent and Terminal Illness l Communication ● Elements: – Terminally ill patients who knew they were – nature, risks, benefits, alternatives, no terminally ill and talked with physicians about treatment preferences were ≅ 3.5 times more likely to ● Information (includes): have preferences honored – burdens of treatment • 44% of patients who knew they were terminally ill had not had conversation with physician about – limitation of treatment if ineffective preferences • Mack JW, Weeks JC, Wright AA, Block SD, Pregerson HG. End-of-Life Discussions, Goal Attainment, and Distress at the End of Life: Predictors and Outcomes of Receipt of Care Consistent With Preferences. J Clin Oncol 2010:1203-1208. 7 8 Communication re: Informed Consent & Palliative Advanced Cancer Care – “Right to Know” Laws l Most patients with advanced cancers of the lung or colon do not understand that ● California Right to Know End-of-Life chemotherapy was unlikely to cure them Options Law (2008) – 69% of those with Stage 4 lung cancer ● New York Palliative Care Information Act – 81% of those with Stage 4 colorectal cancer (2010) – Weeks JC, Catalano PJ, Cronin A, et al. Patients expectations about effects of chemotherapy for advanced cancer. N Engl J Med 2012; 367:1616-1625 9 10 Right to Know End of Life Palliative Care Info. Act – NY (1) Options Law - CA ● Requires a health care practitioner to offer to provide palliative care information and end of life options to a ● When a health care practitioner makes a patient diagnosed with a terminal illness or condition – including but not limited to: diagnosis that a patient has a terminal • the range of options appropriate to the patient; the prognosis, risks and condition, the health care provider shall, upon benefits of the various options; and the patient’s request • the patient's legal rights to comprehensive pain and symptom management at the end of life – provide comprehensive information and counseling ● Where the patient lacks capacity to reasonably regarding legal EOL options, including right to understand and make informed choices relating to refuse unwanted treatment, or palliative care: – provide referral or transfer, if practitioner does not – the attending health care practitioner shall provide information wish to comply with provision of info and counseling under this section to a person with authority to make health care decisions for the patient • Chapter 683, California Statutes (2008) 11 12
Palliative Care Info. Act – NY (2) Refusal of Medical Treatment ● Where the attending health care practitioner is not willing to provide the patient with ● Right to refuse medical treatment information and counseling under this section, ● Grounded in – he or she shall arrange for another physician or nurse practitioner to do so, – Law of Battery – or shall refer or transfer the patient to another – Informed consent/refusal physician or nurse practitioner willing to do so – Liberty Interest of 14th Amendment • N.Y.S. Public Health Law Sec. 2997-C (2010) 13 14 Role of an ethics committee Limitation of Treatment: The Consensus ● First cited in Quinlan (N.J. 1976) – For help in decision making ● Artificial nutrition and hydration (ANH) = – Description adapted from Baylor Law Review article by medical treatment that may be refused K. Teel, MD describing infant care review committee – Majority decision reviewed state cases that ● Exponential growth past decades equated ANH with medical treatment ● Joint Commission requirement of mechanism to – O ’ Connor concurrence “ artificial feeding resolve ethical issues cannot be distinguished from other forms of ● Now ubiquitous in medical centers medical treatment ● Various degrees of expertise and experience • Cruzan (U.S. 1990) 15 16 Limitation of Treatment: Persistent Vegetative State The Consensus ● = Unresponsive Wakefulness Syndrome (UWS) ● Right to refuse any intervention Irreversible loss of cortical activity without loss of l – Ventilators, feeding tubes, blood products autonomic (brain stem) functioning Lack consciousness, awareness • Bartling (Cal.App. 1984), Bouvia (Cal.App. 1986) l • Wons (Fla. 1989), Fosmire (N.Y.1990) Retain reflexes, sleep wake cycles l ● All patients have right, even incapacitated Eyes open l Quinlan (N.J. 1976), Cruzan (U.S. 1990) ● Mnemonic for neuro exam “ Lights on, nobody home ” l ● Withholding / withdrawing – Note: Menomic is not an evaluation of the personhood of the patient. Patients in PVS/UWS, even though they lack cortical – not homicide or suicide activity, are still persons • Barber (Cal.App. 1983), Cruzan (U.S. 1990) Prognosis after 6 months = any recovery extremely l – orders to do so are valid Dinnerstein (Mass. 1978) unlikely – Courts need not be involved – Junkerman C, Derse A. Schiedermayer D. Practical Ethics for Students, Interns and Residents 3rd ed. 2008. • Meisel A. The consensus about forgoing life-sustaining treatment: Its status and prospects. Kennedy Institute of Ethics Journal. 1993;2:309-345. – Churchill LR, King NMP. End of Life Ethics: Some Common Definitions. Social Med. Reader 2nd Ed. 2005 17 18
Voluntary Stopping Eating Minimally Conscious State and Drinking (VSED) (MCS) ● Right to refuse life-sustaining measures MCS = severe and persistent alterations in l – does it extend to oral fluid and nutrition? consciousness ● Can a patient who is decisional put a similar refusal of – Inconsistent but discernible evidence of consciousness, such as the ability to localize sound and tactile stimuli oral feeding in an advance directive – May have sustained visual fixation and pursuit ● to apply when the patient is no longer decisional (e.g. dementia)? – Prognosis for recovery - extremely poor ● What if the now demented patient appears to take offered nutrition Defined 2002 l and hydration voluntarily? Still needs epidemiology, elucidation of mechanisms of ● Meaning of oral feeding as care (vs. artificial nutrition and hydration) l recovery, identification of clinically useful diagnostic and ● Some advance directive legislation does not allow refusal of oral nutrition and hydration prognostic markers for decision making. ● Long term care issues – Fins JJ, Schiff, ND, Foley KM. Late recovery from the minimally Regulatory sanctions & elder abuse allegations conscious state. Ethical and policy implications. Neurology. ● Span P. Complexities of choosing and end game. New York Times. Jan 20, 2015. pD1 col 3. 2007;68:304-307. • Pope TM, West A. Legal Briefing: Voluntarily stopping eating and drinking. J. Clin. Ethics 2014;25(1);68-80. • 19 20 VSED Nevada Advance Directive Authorizing VSED in Dementia 2019 Nev. S.B.121, Signed Jul. 1, 2019; Effective Oct. 1, 2019. l 21 22 ECMO Decision Making Capacity l Extra Corporeal Membrane Oxygenation ● Vs. Competence l ECMO = Priority in Queue for Organ ● Elements: Transplantation OPTN Oct. 2019 – understand the information l ~50% = bridge; – evaluate the consequences and to make a decision l ~50% = final destination (die in ICU) – communicate the decision l Median Charges = $550K/pt ● Assess for each decision – Bailey M. Kaiser Health News/ USA Today. Jun. 17. 2019 23 24
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